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Braden

I was 14 weeks pregnant when my husband showed me a full torso rash that he had.

I was already aware that my immunity to Rubella had dropped so sent him off to the Doctors straight away. We were told to quarantine ourselves for a few days and then a week later we got the results back that my husband had contracted CMV.

The Doctors had gone back and tested my original antenatal bloods and found that I had not had the virus before. They also told me that as I was 14 weeks pregnant that I would be fine. Everything I had read online about CMV disagreed with this so my midwife got me a second blood test, this showed I had now acquired CMV but not recently.

Following my second ultrasound at 18 weeks we found that Braden had an echogenic bowel and I was referred to a specialist due to my odd blood result. From there I was referred to a specialist obstetrician and at 21 weeks had a further ultrasound. Braden's liver was enlarged and coarse and he was smaller than he should have been. We received the news that he had most likely contracted CMV. The hardest part was telling our friends and family. We knew at least six people who were also pregnant at the same time as us and we had to tell them that we had unknowingly exposed them to the virus that could now take our unborn baby from us.

We continued with monthly visits to the obstetrician, each time being told that he was small but growing and that his brain looked ok from what they could tell.

At 39 weeks I was induced as they wanted to ensure that I was able to give birth at the tertiary hospital, 300km from home, in Wellington.

At birth Braden had a petechial rash and jaundice, he required a small amount of oxygen, but otherwise was doing ok. He was 5lb 15oz, nearly 3lb less than my first child.

Over the next few days Braden's hearing and sight were tested and he had a head ultrasound. He has hearing loss in his right ear, vision loss in his right eye and he has cysts and calcifications throughout his brain.

As Braden's hearing was affected we agreed to him having the six week intravenous course of Ganciclovir. 10 days after birth we were flown back to our local hospital where we stayed until Braden was 6 1/2 weeks old, finishing the treatment three days early after his third IV line failed. The treatment had worked though and his viral load was clear.

We have had a huge journey so far but he is doing so well and fits into our family with ease. We have much to learn about how CMV has affected Braden but, luckily for us, our early diagnosis has meant that we were set up from the start to give him the best possible chance. He has recently started walking and to aid with communication, until his speech can catch up, we use Makaton, which Braden is learning at an amazing rate.

Braden's current list of diagnosed conditions are:

Left Hemiplegia

Microcephaly

Macular Coloboma of the Right Eye

Sensorineural hearing loss Right Ear

We have been working with a neurodevelopmental therapist for the past two years and have recently been discharged to a physiotherapist. We can be referred to an occupational therapist if required. We also work with a speech therapist who has helped with signing (Makaton) and oral skills for eating (Braden had delayed hand to mouth coordination and fine motor skills). We have six monthly hearing checks with audiology and are also seeing an Ear, Nose and Throat specialist every 4 - 6 months as Braden also has glue ear. Opthalmology visits are between 6 and 12 months to keep an eye on his vision and we have now reduced from 6 monthly to annual paediatric visits.

We had a period of a few months when we realised Braden had sleep apnoea and he has on occasion had some form of night terrors, however, these episodes are rare now and the sleep apnoea was not at a level to be concerned about.

Braden has motor delays and did not start commando crawling until he was about 13 months and it was a few more months before he began full crawling. At 22 1/2 months, he finally started walking and is learning to balance and get more control.

January 2015 Update:

Braden just turned 3 and is actively running, walking and jumping like his peers. He is a bit delayed with speech and learning, but he is getting there!